This blog should
be about my fight against weight loss following the Whipple surgery. It should be about attempts to increase food
intake that backfire. It should be about
domestic disputes regarding my activity level.
It should be about a camping trip Brian & company had in our back
field that led to a serious over-indulgence by me in hot dogs and s’mores.
Instead it
is about a frightening bleeding episode on Sunday, 7/16, that brought me back
to the emergency room at Emerson, then into Beth Israel by ambulance, then into
the operating room for emergency surgery.
Barbie will
say it was because I was overdoing the trips to the garden for weeding, and not
getting enough rest. The doctors tell me
that a pool of pituitary juice toward my back partially digested the arterial
wall of a major blood vessel, resulting in major bleeding. Either way, I was
taking a nap on the living room couch Sunday afternoon when my back started to
bother me intensely. I thought it was a
symptom of Multiple Myeloma, since my MM numbers are through the roof. But no, MM had nothing to do with it.
When I went out to the kitchen to tell Barbie
about it, she pointed out with horror that my drains were completely full, my
pants were full of blood, and the dressing on the surgical wound was saturated
with blood. [If you want a picture,
Barbie took one that we can share. The
assumption is most folks reading this blog would prefer to give it a pass.]
We started
to empty the drains, only to find the material in them was largely blood that
had clotted, so it wasn’t coming out.
Pretty quickly we decided that the local (Emerson) emergency room was
the next stop, so off we went. We toyed briefly
with the idea of driving directly to the BI emergency room, but there was a Red
Sox double header that afternoon/evening, so we were afraid of the traffic. And Barbie did not want to be driving that
distance with me bleeding so profusely.
In the future, 911 will be the appropriate response….but somehow,
neither of us thought of it in the heat of the moment.
The Emerson
ER people were quick to evaluate the situation and decide this was out of their
league. Additionally, the BI doctor told
them to send me on to them ASAP, so I sped on into BI via ambulance. I do
remember the ride but not much after that.
Perhaps I was light-headed as a result of the loss of blood. At any rate, by 10PM on a Sunday night in the
middle of the summer, BI had assembled a surgical team that went in and fixed
me up. Talk about heroic action! But one of them said to me later in the week
that is what you sign up for when you agree to be “on call”. Thank heaven they maintain a full “on call”
roster.
The on call
people were in the Interventional Radiology department –a field of medicine I
didn’t even know existed 3 months ago. To
staunch the bleeding, they accessed my abdomen through an artery in my right
groin. They put something that
reinforced the arterial wall in the vessel that was bleeding (a “coil”), and
brought the situation under control. I
woke up the next day in the ICU with a new hole in me, a new batch of
dressings, and drains that were still actively pulling out the blood that had
accumulated in the surgical site. Once
again, I don’t remember a good deal of Monday and Tuesday, as I slept off the
effects of the anesthesia and the surgical wear and tear. Now two groups of surgical follow-up people
came to visit me: the original surgical team from Dr. Kent’s department and the
group from Interventional Radiology.
Pretty soon the interventional radiologists dropped out and the Whipple
team reasserted its control.
After a day
and a half in the ICU, I ended up back on the same floor as post-surgery, but sharing
a room with a fellow from Ohio who was unable to move on his own. He had to be moved from bed to chair via a
hoist, as he was unable even to stand.
It made me appreciate the fact that I was totally mobile and able to
fend for myself in most regards. I ended
up fleeing the room and reading in a solarium because generally there was a TV
on in the background, either westerns or game shows. Books that people had lent me came in very
handy. Barbie and I continued to play
cards to pass the time.
The
challenge of maintaining my weight was compounded by the reality of hospital
food. By this time the menu of the
Sodexo contractor that provides meals at BI has become mind-numbingly
familiar. The doctors added Carnation
Instant Breakfast to my diet, but I have to admit that not much of that made it
down. Wednesday they gave me a blood transfusion to try to restore some of what
was lost, and to help with my general anemia and sorry nutritional state.
Yesterday
they released me, in time to meet with Dr. Levine, my Multiple Myeloma
oncologist. Things were a bit late, as
the paperwork always takes longer than the nurses anticipate. But we got to the East Campus, and had a long
meeting with Dr. Levine. He said I had
been through one of the largest, longest procedures that people can go through
and still claim to be a complete person.
While recognizing the many challenges ahead, he commented that I had
dodged “the big one”, referring to the fact that the final tumor biopsy
revealed it to be pre-cancerous. Barbie
expressed great relief that I did not have to go through post-surgery radiation
and chemotherapy. Dr. Levine calmly
added, “And those usually don’t work”. I
was lucky, indeed.
The plan is
for me to get a completely new Multiple Myeloma drug, Daratumumab, next
week. I will go in for blood work and
evaluation Tuesday, and then arrive early for an all-day infusion on Wednesday. They give the infusion very slowly because
people can have negative reactions to the new drug. They can counteract the reactions, but they
need to be very careful. The doctors
have also explained that the optimal treatments for my two conditions (Whipple
recovery and Multiple Myeloma) are in conflict – obviously you do not want to be
taking an anticoagulant when you are trying to heal from major surgery and have
experienced internal bleeding. But one
of the most serious side affects of the Multiple Myeloma drugs is the risk of
clot formation. In the ideal world, the
body would be allowed to heal from the surgery prior to starting an
anti-coagulant in preparation for strong chemotherapy; but the Multiple Myeloma
has gone untreated since May 26, so we cannot risk ignoring it any longer.
Sunday’s
dramatic and serious bleeding episode was a real set back physically, but was
also a wake up call, an indication that they were very serious when they said
the recovery from the Whipple would be long and slow, and that the body needs
lots of rest to recover. This time, trips
to the garden are going to have to wait.
For the first time in my life, food holds no appeal, but I realize the
importance of nutrition in the healing process.
Whoever would have thought that such a basic – and enjoyable – basic
function (eating) could so quickly become a vital chore?
I hope to
keep things much more boring in the near future. So, Mrs. Lincoln, otherwise
how did you enjoy the play?
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